About Non-Profits (Part 1)
I’ve been receiving letters asking for donations from multiple non-profits including the 5 main groups associated with dystonia. I felt like I was being asked to donate a rare form of blood. But, in truth, reading thru all the group sites ( except for mine www.care4dystonia.org - ok I’m biased, so be it, all non profits are !) each essentially had the same mission, same goals; yet none of them of talked to one another. No one collaborated with one another. I thought there was power in numbers ? May be not ? New groups were forming online - whether it was for research, new treatments, chat and support groups on a monthly basis. There seemed to be dissatisfaction to a certain degree with the current groups; some of whom simply turned their backs when questioned from members about certain issues. What did patients, people with dystonia and families really want ? Was that question being answered ? I just reviewed current distribution of funding- almost all of it was given to the DYT1 gene and the torsion A protein. This year I didn’t see iRNA involvement at all. May be I missed that one ? What about beta-actin proteins ? What about epidemiology ? What about the development of new treatments ? New focus, new visions ? Were members of all these groups truly satisfied with ” where their money was going ? “. I decided not to donate to any of the groups except to www.spasmodictorticollis.org. I didn’t have a rare blood type. I was O- Rh negative !
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